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Understanding Mal de Debarquement Syndrome

There are people who suffer with a continual sensation of movement, named Mal de Debarquement Syndrome (MdDS). It can be a normal response of the balance system after returning from a fishing trip, a cruise, a long airplane flight or even surfing and snorkeling. The individual will feel the motion of being in or on the water even though they are on land. It can last a few minutes or hours then usually diminishes completely.

Symptoms

There are people who suffer the same sensations for months, years or indefinitely. They have a continuous feeling of swaying, floating, rocking or even bobbing. It can cause significant fatigue, headaches, poor coordination, anxiety, excessive sleeping and depression. Some people report the sensation of pressure in the brain, hypersensitivity to smells, light and loud sound, brain fog and, of course, nausea. This is turn makes it difficult to live a normal life and hold a job. Social activities are compromised because the symptoms are usually increased by stress, sudden movements, lack of sleep, flickering lights and busy patterns on the walls, floors or the pattern on the clothes someone is wearing. One person said that it is like constantly walking on a mattress or trampoline. This sensation is more obvious when a person is still or inactive. The complaint of it becoming worse when not moving separates this type of disorder from the traditional balance problems. Usually movement makes balance problems worse, not better. The incidence is rare; about 1 in 100 persons with dizziness have MdDS.

What Causes this Feeling of Motion?

The professionals do not know what causes this disorder. One theory of the cause of the sensation is that the vestibule-ocular reflex (VOR) is not functioning properly. This reflex is a mechanism in the inner ear that is responsible for maintaining balance and stabilizes the eyes during head movement. Another theory is that similar to space travel motion sickness (SMS) reported by astronauts, a type of adaptation occurs to the vestibular system. It may be “rewiring” the pathways that control balance. Researchers are attempting to find the culprit by working with rodents raised in various degrees of gravitational environments to see if they can acclimate to changing gravitation. A theory proposed by Dr. Cha is with MdDS there is increased metabolic activity in areas of the brain responsible for storing spatial information (knowing where your body is in space) and less action in the areas of the brain that regulate these storage areas. Because determining the cause is still in a state of infancy we do not currently have definitive tests that confirm MdDS, the tests completed are preformed to rule out other causes.

Testing for MdDS

Some of the tests completed to exclude other disorders are:

Neurological examination

ENG test (electronystagmography)

Rotary chair test

Caloric Stimulation

Audiogram

Blood tests (CBC, blood glucose, vitamin B12)

Blood tests for autoimmune disorders that may involve the ear

ANA (anti-nuclear antibodies)

TSH (thyroid stimulating hormone)

Anti-microsomal antibodies

Anti-cochlear antibodies

HLA-DR determinations

MRI of the brain and/or MRA of the brain stem and neck

ECOG – if hearing is abnormal

Posturography

High resolution cat scan to rule out small fistulas or superior canal dehiscence syndromes, especially if history of barotrauma

Treatment for MdDS

The traditional treatment for motion sickness has little or no effect for the symptoms of MdDS. Some people are helped with a vestibular rehabilitation therapy called the Cawthoren-Cookey exercises, especially those suffering with simultaneous balance problems or unsteadiness. The visual miscues and related issues are not helped with this therapy. If you subscribe to the VOR dysfunction, the treatment is to rock the person at one cycle per five seconds, three to five times a day for one week. Many people experience relief from this type of therapy.

Coping with MdDS

All long-term dysfunctions of the body require patience and persistence. Because there is not one cure for this disorder, it is important that you see a primary care physician, an ear, nose and throat specialist and a neurologist to rule out other causes for the symptoms. Write out a time-line log of symptoms when they started, what aggravates them and what activity reduces the symptoms. Include notes about level of stress, medications you take and even if your diet changes. The more information you collect, the better the physicians can help you determine the best treatment for your specific symptoms. There are online MdDS support groups that can offer emotional support and keep you abreast of any new therapies that are developed. QCBN

2 Responses to Understanding Mal de Debarquement Syndrome

Thank you for attempting to raise awareness of Mal de Debarquement Syndrome. The MdDS Balance Disorder Foundation continues to seek treatment and a cure for MdDS. We encourage you and others to continue to raise awareness but it is important to share accurate information. We would love to work with you to make this happen. Mddsfoundationdotorg
@mddsfoundation
Please contact us so we can work together.

Thank you for helping to raise awareness about MdDS. The treatment mentioned in this article re the VOR and rocking the head of the patient is new to me and I wonder if you meant to discuss the opto-kinetic stimulation protocol devised by Dr Dai at Mt Sinai Hospital in New York?
This protocol does, indeed, involve rocking the head but also involves the patient being exposed to projected, rotating striped lines which may work to re-adapt the VOR. I think it is unlikely that just rocking the head would have any benefit although it would be great if it did 🙂
Many thanks again.

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